Fatigue
Doctors
Panel Answers the PBCers
The Mount Sinai Medical Center
October 1999
Question:
Can you explain why some sufferers
of pbc have chronic fatigue and others are totally unaffected and can carry on as normal, and yet they
have or have had extreme itching?
Answer:
The subjective nature of the
complaint (chronic fatigue) has made it difficult to
scientifically study this symptom. The same thing goes for itching. In
late stages, the itch may persist, although like fatigue, itching can also be
one of the earliest manifestations of the disease and it may or may not persist
with or without treatment.
Hugo E. Vargas M.D.
Medical Director, Transplantation
University of
Pittsburgh Medical Center
November 1999
Question:
Fatigue plagues most everyone with
PBC. It is debilitating -- really
interfering with life and daily plans. Please explain what causes the
fatigue. Is any research being done to solve this
issue? Should one push to continue exercising during a fatigue episode?
Answer:
Fatigue is not unique to PBC and is one of the more common problems in the setting
of chronic liver disease. Despite efforts to figure out why it develops, it has
been hard. It is particularly difficult to study because it is a complaint that
although real is difficult to measure. I recommend to
my patients to exercise as tolerated.
Howard Worman
M.D.
Division of Digestive and Liver
Diseases
Departments of Medicine and of Anatomy and Cell Biology
College of Physicians & Surgeons
Columbia University
New York, NY 10032
December 1999
Question:
Is there anything that a person
with PBC can take that will help with the fatigue?
Answer:
Some patients with liver disease
suffer from fatigue, some don't.
The cause is not clear. There is no single activity that can relieve fatigue.
Medications are not helpful. In part, maintaining a positive attitude may help
("I know I'm tired but I'm not going to let it get to me."). This is
not always possible for individuals with severe fatigue.
Arranging your daily schedule so
that you have time to rest may also help.
Similarly, doing most of your
activities when you feel the best (e.g. early morning, late afternoon) may also
be beneficial. Finally, a regular exercise program may help one overcome
fatigue. Before starting an exercise program, individuals with PBC should consult their doctors.
The Mount Sinai Medical Center
February 2000
Question:
Since I've
been taking prevalite I have been experiencing muscle
aches and pains in my back, hips and knees. Could this be a side effect of the
drug? I take two packets a day in the morning for the
itching. If this is a side effect of the drug, would
you advise your patient to stop taking it? Is there something you would
prescribe?
Answer:
Prevalite (cholestyramine) should not
cause the symptoms you describe. However, any drug is capable of causing any
side effect in a given individual. Under your doctor's supervision, you might
want to discontinue the therapy for a week or so and see if the symptoms resolve.
If they do, I would recommend testing the medication
again in a few weeks to see if the symptoms are truly due to the Prevalite.
The Mount Sinai Medical Center
February 2000
Question:
My itching is severe - tried Questran/
Benadryl/ Atarax without success. I
am Stage 2/ on Actigall & either Methytrexate or placebo & am in clinical Trials at MCV. Now they want to try Rifampin
- as a nurse practitioner, I know the reasons for general prescribing and the
side effects, etc. but do not know why this can help with PBC
itching. Comments? Any other suggestions?
Answer:
I can't
tell you "why" rifampin helps, and I'm not
sure anyone really understands the reason. Several papers have found rifampin beneficial in treating itching associated with
liver diseases such as PBC. Other experimental
therapies that have met some success include opiod
antagonists (ex. naloxone) and ultraviolet light.
Howard Worman
M.D.
Division of Digestive and Liver
Diseases
Departments of Medicine and of Anatomy and Cell Biology
College of Physicians & Surgeons
Columbia University
February 2000
Question:
I suffer fatigue on an ongoing daily basis. I have been told that since I am on Urso
and my blood work is good that my PBC is not the
cause of the fatigue. Yet here I am and so are many
other PBCers I have listened too. Please explain fatigue and PBC.
Answer:
Some patients with chronic liver
diseases, including PBC, suffer from fatigue. I am
not aware of any study that correlates fatigue with "blood work" (presumably you are referring to laboratory tests such as
alkaline phosphatase activity, etc.). To my knowledge, there is no direct association between fatigue
in liver disease and any laboratory test results. The cause of fatigue in
chronic liver disease is not clear. And it is often
difficult or impossible to determine if "fatigue" is a result of the
underlying liver disease or something else (e.g. depression). But fatigue can result from chronic liver disease.
There is no
single activity that can relieve fatigue.
Medications are probably not helpful. In part, maintaining a positive attitude
may help ("I know I'm tired but I'm not going to let it get to me.").
This is not always possible for individuals with severe fatigue. Arranging your
daily schedule so that you have time to rest may also help. Similarly, doing
most of your activities when you feel the best (e.g. early morning) may also be
beneficial.
Finally, a regular exercise
program may help overcome fatigue. In the near future, my
colleague at Columbia Dr. Nora Bergasa plans to start
a study of regular exercise for fatigue associated with liver disease. Before
starting an exercise program, individuals with PBC
should consult their doctors.
Hugo E. Vargas M.D.
Medical Director, Transplantation
University of
Pittsburgh Medical Center
June 2000
Question:
I have heard some people taking Carnitor
to help with the fatigue. Can you give me some information
about what this drug does and what the indications are for its use? Who should
take it? Do you have suggestions for the PBC fatigue?
Answer:
Carnitine metabolism has been found to be
abnormal in patients with PBC. However, I know of no study that links supplementation of Carnitine to improvement in fatigue. The leading theories
about the fatigue of PBC include endocrine
impairment, serotonin neurotransmitter abnormalities and possible auto-immune effects.
David Bernstein, M.D.
Chief, Division of
November 2002
Question:
People always say "I'm tired too," and it's hard to explain
our fatigue. How would the doctors suggest we explain PBC fatigue to others?
Answer:
The symptoms of fatigue are about the same regardless of the
cause.
The difference in PBC is that fatigue is
not situational nor is it generally relieved by rest and sleep. Most people are
tired from either lack of sleep, stress or situational or true depression. Once
people are well rested, stress is relieved or
depression resolved, fatigue improves.
This is not true in PBC as the source of fatigue is different. The fatigue is a
result of the disease and is progressive. It tends not to get better. Only
treatment of the disease will improve fatigue and currently, there are no good therapies which improve the fatigue associated with PBC.
Andrew Mason, MBBS MRCPI
Associate Professor of Medicine
Division of Gastroenterology, Department of Medicine,
University of Alberta, Edmonton, Canada
December 2002
Question:
Fatigue: Could you explain why it is so bad in PBC?
What causes it?
Answer:
All liver disease can have severe fatigue as the main complaint. This probably
occurs because the liver is the main manufacture and degradation organ for the
body. So if this is deficient, the main result is lack
of energy.
Andrew Mason, MBBS MRCPI
Associate Professor of Medicine
Division of Gastroenterology, Department of Medicine,
University of Alberta, Edmonton, Canada
December 2002
Question:
Is there anything that can be done to help?
Answer:
As fatigue is the main presenting factor for depression, we sometimes use
anti-depressants to boost energy.
The Mount Sinai Medical Center
October 1999
Question
Is there a direct impact on one's fatigue level if the thyroid as well as LFT's are in the high ranges? Does any one blood test indicate fatigue? Do symptoms of fatigue and general malaise correlate with stages of the disease?
Answer
Thyroid disease, independent of liver disease, may cause fatigue, and thyroid disease is more common in PBC than the general population. So, the answer to the first part of the question is a definite yes.
However, no blood test can predict fatigue in patients with liver disease. In fact, the level of elevation of the liver blood tests has no bearing on fatigue.
As well, fatigue can occur during any stage of the disease.
Fatigue is reported in 60 to 90 percent of patients with PBC and the cause is unknown. The fatigue may be intermittent, or it may occur for prolonged periods of time.
The subjective nature of the complaint has made it difficult to scientifically study this symptom.
The Mount Sinai Medical Center
October 1999
Question
Can you explain why some sufferers of pbc have chronic fatigue and others are totally unaffected and can carry on as normal, and yet they have or have had extreme itching?
Answer
The subjective nature of the complaint (chronic fatigue) has made it difficult to scientifically study this symptom. The same thing goes for itching. In late stages, the itch may persist, although like fatigue, itching can also be one of the earliest manifestations of the disease and it may or may not persist with or without treatment.
The Mount Sinai Medical Center
February 2000
Question
How would doctors suggest we explain PBC fatigue to others? People always say, "I'm tired too", and it's hard for them to understand the fatigue I have. Do you have any suggestions to help with fatigue? Thanks!
Answer
That is a difficult question. Yes, everyone experiences fatigue from time to time but fatigue associated with liver disease has been studied extensively and has been shown to be unrelated to other causes of fatigue (lack of sleep, stress, depression etc.). Many describe the feeling as "hitting a wall".
Some individuals have no choice but to succumb to the fatigue and plan on napping each day. For most people, however, incorporating some sort of aerobic exercise into the routine is the best treatment. Many people scoff at this suggestion because when you feel tired, the last thing you want to do is exercise. Yet, when exercise becomes part of your routine, the time invested generally pays off by increasing your energy level. The principle is similar to a car battery recharging itself.
Dr. Hugo E. Vargas
Medical Director, Transplantation
University of Pittsburgh Medical Center
June 2000
Question
I have heard some people taking Carnitor to help with the fatigue. Can you give me some information about what this drug does and what the indications are for its use? Who should take it? Do you have suggestions for the PBC fatigue?
Answer
Carnitine metabolism has been found to be abnormal in patients with PBC. However, I know of no study that links supplementation of Carnitine to improvement in fatigue. The leading theories about the fatigue of PBC include endocrine impairment, serotonin neurotransmitter abnormalities and possible autoimmune effects.
Dr. Howard Worman
Division
of Digestive and Liver Diseases
Departments of Medicine and of Anatomy and Cell Biology
College of Physicians & Surgeons
Columbia University
New York, NY 10032
February
2000
Question
I suffer fatigue on an ongoing daily basis. I have been told that since I am on Urso and my blood work is good that my PBC is not the cause of the fatigue. Yet here I am and so are many other PBCers I have listened too. Please explain fatigue and PBC.
Answer
Some patients with chronic liver diseases, including PBC, suffer from fatigue. I am not aware of any study that correlates fatigue with "blood work" (presumably you are referring to laboratory tests such as alkaline phosphatase activity, etc.). To my knowledge, there is no direct association between fatigue in liver disease and any laboratory test results. The cause of fatigue in chronic liver disease is not clear. And it is often difficult or impossible to determine if "fatigue" is a result of the underlying liver disease or something else (e.g. depression). But fatigue can result from chronic liver disease.
There is no single activity that can relieve fatigue. Medications are probably not helpful. In part, maintaining a positive attitude may help ("I know I'm tired but I'm not going to let it get to me."). This is not always possible for individuals with severe fatigue. Arranging your daily schedule so that you have time to rest may also help. Similarly, doing most of your activities when you feel the best (e.g. early morning) may also be beneficial.
Finally, a regular exercise program may help overcome fatigue. In the near future, my colleague at Columbia Dr. Nora Bergasa plans to start a study of regular exercise for fatigue associated with liver disease. Before starting an exercise program, individuals with PBC should consult their doctors.
END